About

Like so many others, my life has been turned topsy-turvy by dementia. My mother died a few years ago from Lewy body dementia, and my husband now has Alzheimer’s.  I’ve spent many hours on discussion forums, trying to find tips on how best to care for my husband, and compiling them into articles to help my fellow caregivers.  I keep files on useful resources and web sites.  And when fellow caregivers have had questions about healthcare, legal, and financial issues, I’ve conducted searches and written synopses of my findings.  I thought it might be useful if I periodically post some of the information I’ve developed.

I’m sorry if you have a need to be here — but I hope I can help.

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24 comments

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  1. V says:

    Thank you for your hard work in putting together such helpful information and resources for caregivers.

  2. f. says:

    You’ve made lots of good information available here. I expect to be a frequent visitor. Thank you.

  3. Brunhild says:

    I would like to give thanks very much for the job you have made in writing this piece of writing. I am hoping the same most reliable job by you later on too.

    1. Martin says:

      No real message. Just a “Thank you”for you being you and being such a helpful person.

  4. Nancy Demarte says:

    Thank you for all this great information. I have bookmarked this site and will be checking it often. We need all the help we can get on this journey.
    Nancy (northernlights)

  5. Lois Mohr says:

    Great to see this Blog. I have relied on you for several years to provide information I could use with my husband. I will refer to friends. Have you bookmarked.

  6. Patricia Gallagher says:

    This is such a great site. Thanks for sharing your compassion and intelligence.

  7. Arline Gandy says:

    How we keep in touch with you now I so like the chat at alz. site. So,I will have to keep going there for now. If, you find another way for us to connect. Thank you for the help that you have previded for us all. You have given me alot of know how thank you so much.

    I hope you know how many people you have helped and touced. God Bless you…

  8. Pat Federle says:

    Just wanted to thank you again for all you have done for us!! I was wondering if you had done some research on the possible correlation between lack of sleep and the development of Alzheimer’s? Hope you and your DH are doing well!

    1. AlzCarer says:

      Pat, I have not … but I can certainly move it up on my list of planned blogs.

  9. Becky says:

    I found you! I shall be a frequent visitor here!
    Thank you,
    ‘Olivers mama’ :o )

  10. Debbie says:

    Hi JAB,
    I found you too! I’ve also bookmarked your site.

    Thanks for all your help in the past.
    Gladysgirl

  11. MaryGW says:

    Well.. 15 minutes ago I joined the connect site and saw “good-bye” and so was led here. I am very glad I did! So much info…thank you!!
    Mary

  12. Dave Mainwaring says:

    Found you again and again Perhaps you could post a “Caregivers Community Network” and allow us to exchange comments between caregivers. Losing precious people on the AA online forum has let a hole in our family of caregivers. Maybe a post regarding Spouse or Partner Caregiving and our lives.

    1. AlzCarer says:

      Hi, Dave. Cheryle and I have been talking about whether to join another of the already-established discussion forums, or perhaps set up a simple message board. Will let y’all know when we decided what to do. Right now, I’m trying to get that hallucinations blog written. Sheesh. The topic turned out to be even more complicated than confabulation.

      1. Dave says:

        With all you have on your plate how do you find time to take care of yourself. Take care of yourself!!

        1. AlzCarer says:

          Good advice for everyone who comes here! (You included! ;) )

  13. Trace says:

    Hello JAB,

    I’m so glad I chose to go back to the alz site today after a very frustrating and lengthy conversation with an alz hotline person.

    Sounds like we are in similar boats, except you are farther and more experienced than I. I am 45 years old. My husband is 49 years old. In the last 3 1/2 years we have gone from Early-onset Alz, parkinson’s epilepsy and so on. My husband is still in the very early stages. We have been married twenty years and until this all started we never had any secrets and it was always he and I against the world. We have always had lots of passion. Not sexual passion necessarily, we were just passionate in everything we did. We even had one friend say she didn’t feel comfortable going to eat lunch with us because she felt like a third wheel. We included her in conversation and never touched eached other, that was just how close in spirit we were.

    Well, what do you think was the first to go. He is now very apathetic. It kills him to know he has hurt my feelings. All info I have found refers to kids and teens, ect.. but never refers to spouse-always as caregiver. Why do we have to give up our role as beloved wife or husband and all of a sudden become caregiver?

    I have found daily activity sheets for everything from brushing your teeth to eating a snack. Have you or anyone else run across daily activity sheets that include things like-pick a flower in the yard and give to your spouse for no reason, ask your spouse to sit on the couch next to you. The little things that make being a spouse or “caregiver” seem special

    Any help would be greatly appreciated.

  14. Marcia says:

    Hi JAB — Keep up the good work. Have you thought about setting up a Yahoo Message Board Group? Hope all is well with you and your DH.

  15. Nora says:

    JAB, thank you for continuing your good work here! I learned that you left the “Connected” boards recently and was glad to find your blog. We need all the information and support we can get, and you have accumulated so much knowledge. Thank you!

  16. Kim Bledsoe/Cowboys says:

    Hi JAB, I just wanted to say hello and see how you are. I am glad to see that you are still helping so many people with your expert knowledge. You have helped so many of us. I will always be grateful that you were there when I was on my journey with dad.

    I have had a very difficult time with my grief and continue to try to find peace.

    God Bless you for all you do.

    Peace.

    1. AlzCarer says:

      Kim, how nice to hear from you! Although I am so very sorry to hear you’re still struggling with your grief! Memaw2287 mentioned one day that she thought caregiving for a loved one with dementia could cause its own version of PTSD, and a light bulb went on — PTSD is caused by severe, prolonged stress and does not necessarily involve violence. Sure enough, a quick google disclosed that there are enough studies on PTSD from caregiving that it’s not a matter of whether it can cause PTSD, but how often (the numbers are very high) and which factors are more likely to cause it to develop and/or which interventions can help. One of these days, I intend to do a blog on this subject. Right now, though, I’m having some health problems that limit my ability to use the computer. (Talk about withdrawal symptoms!) Keep in touch. Much love, JAB

  17. hgg says:

    This is a great site and I thank you very much for putting it together.

    Remark, though: I personally find the constant reference to the afflicted person as “your loved one” to be distracting, and it makes otherwise very useful information difficult to read. The information is, for the most part, about the person themselves, not the readers relationship to that person. References to “the patient” and “the caregiver” are standard.

    1. AlzCarer says:

      Hi, hgg. Thank you for your input. I have been pondering it since you wrote.

      My use of “loved one” is a hold-over from eight-plus years on discussion forums for caregivers, primarily family members and friends (as opposed to professional care providers). The forums in which I’ve participated have used that terminology. It has rubbed some members the wrong way when they have not had a good relationship with the patient — an estranged parent, perhaps, or a divorced spouse. (I can’t imagine being the 24/7 caregiver for someone you don’t deeply love. How hard that must be!) For the rest of us … the word “patient” feels too impersonal, too de-humanizing. The information is about the patient himself, yes, but it is written to and for the caregiver, and most of the caregivers I encounter have a personal, and usually very loving, relationship with the patient.

      I can see where a professional care provider might feel like he’s stubbing his toes every time “loved one” is used, however.

      So. As I write new articles, I will consider whether a more standard terminology might fit the subject matter of the article of interest better.

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